POTSparent

This is sort of along the lines of an alternative to the "to florinef or not to florinef" question. I noticed EarthMother, perhaps a couple of others here, take DDAVP. My daughter just started that about 5 weeks ago. DDAVP is a very common medication normally given to adolescent bedwetters. It has the effect of helping one retain the fluids more easily. And that's part of what dealing with POTS is all about for those with blood volume issues. While certainly no Rx expert here, that's pretty much what florinef has always been said to help do. But there seem to be about as many people who talk about unwanted side effects from florinef as those here who say it helped. So is DDAVP perhaps a better alternative for those who didn't handle florinef well? Doctor said it's normally given at night (obviously), but to take it in the morning instead. Put "once a day" on the Rx instead of "every morning" simply to avoid having to deal with a questioning pharmacist who would figure that the Rx was made out wrong. Oddly enough, the main reason this prescription was written in the first place had nothing to do with fluids -- but rather a bleeding disorder somewhat common (or at a disproportionate rate) amongst POTS patients. This "bedwetters" medicine also possesses (for reasons I can't quite grasp) an effect that allows the blood platelets to stick together a bit better which is beneficial to preventing bleeding. And, of course, excessive bleeding is just something that POTS patients absolutely don't need if blood already low anyway. But back to the florinef-alternative angle. You know how the docs push "fluids fluids fluids"? And the downside of that is the frequent need to go to the bathroom disrupting some of one's normal daytime activities? Well, by taking this DDAVP help-one-to-hold-it-at-night medicine in the mornings, my daughter has observed a lesser need to go running to the bathroom due to the fluid intake load as her day progresses. Time will tell how well this works for her for her bleeding disorder, but I do find it initially interesting how it's working on the POTS side of things. Any thoughts from those who have taken DDAVP longer? POTSparent

I don't suppose anyone here has collapsed from the sudden loss of use of one of their legs instead of simply "blacking out", have they? As many offbeat symptoms of dysautonomia that there seems to be, just wondering. Has happened about 4 times in last 2-3 weeks. Regain feeling and function to leg practically before hitting the ground! If anyone has ever had such episodes, could they elaborate? Thanks.

Hi Nina, I know that hair loss isn't on the "official list" of symptoms. And, given the variety of meds used in treatment, I'm not saying that hair loss might be a factor without those meds. But let's think about what's on that "official list" -- chest pains, heart palps, dizzy/lightheadedness, gastrointestinal issues, fatigue, and a long "et ceteras" listing. General imbalances of the system. And one can have symptoms more in line with gastrointestinal IBS, or more in line with fatigue CFS, or more of the dizziness POTS issues ..... and all be consistent with dysautonomia. Even Dr. Grubb -- from responses of others both now and in the past -- keeps answering "it's probably the meds" whether that be florinef or something else. And some of the Dynakids have had hair loss problems. Still, through it all, none of the dysautonomia "experts" provide any sort of definitive answer. I'll concede that hair loss may be impacting only a small portion of the dysautonomic patients, but not that it's not a part of the dysautonomic picture. Maybe it's caused by imbalances consistent with dysautonomia. Maybe it's caused by the meds used to treat dysautonomia. But either way, it's part of the problem for some of the patients. Anyway, by trading notes with some that have suffered hair loss, maybe some clues can be discovered. POTSparent

Hi to all: This is to all that have experienced hair loss more than you consider to be normal. I recognize that many have not, but a number of dysautonomic visitors to this site have. I'd like to compile some feedback to take to a doc who is of the opinion that hair loss is not a symptom associated with dysautonomia while I, on the other hand, feel that it's due to an imbalance (whether caused by the body or by medications) that's very much tied to dysautonomia's general nature of "imbalances". My questions can't be well-handled by the "poll" function at this site, so to those who have experienced episodes of hair loss .... I'd appreciate a reply and I'll compile info after a while and re-post. 1) What's the most typical description of any hair loss? a) constantly thin hair problem problem comes and goes -- general overall thinning c) problem comes and goes -- lose "patches" of hair d) problem comes and goes -- extensive overall loss 2) Assuming answers b-d to #1 above, has the frequency of problem been: a) happened one time only happened multiple times 3) Was your doctor's opinion that the problem was the result of: a) didn't get doctor's opinion long-term reaction to medication -- florinef c) reaction to medication -- beta blocker d) reaction to medication -- SSRI e) body chemical imbalance -- mineral (e.g., zinc, manganese) f) body chemical imbalance -- hormone (e.g., cortisol) g) stress h) general hereditary i) other __________ 4) Assuming received doctor's opinion to #3 above, was that doctor a: a) dysautonomia specialist endocrinologist c) dermatologist d) other specialist (e.g., cardiologist) e) general practice (incl. gyn) Additional comments welcome.

Briarrose, Thanks for the link to the Alopecia site. Good reading. The dermatologist ruled out Alopecia ... I just can't remember why. I think part of it was that not even the most extreme definition of Alopecia was intended for it all to happen within 72-hrs. Perhaps 2-3 weeks, but not 2-3 days. Another factor, I believe, was how quickly hair growth resumed. Still, my memory is fuzzy on that point. I just remember that (alopecia) being discussed right along with thyroid, etc. Nadolol (the beta blocker) was discontinued. For what it's worth, the hair grew back a different color! Weird. Hair had been "dirty" blonde. First came in dark, but then started lightening up. However, the final color definitely had a tint of red to it. Whatever the color -- it's hair! We sort of live in dread of a potential 2nd episode where it all falls out, though we'd be better mentally prepared for it the 2nd time around. Oddly enough, there's another teenage girl who shares the somewhat rare bond of this POTS/NCS in our state with our daughter. She's lost her hair twice -- both before her teenage years. And that's before any diagnosis. No common medicine bond. So, again, that's why we remain cautious as to the validity of the beta blocker being identified as the culprit. Anyway, thanks again.

One trick that the hot shower lovers might want to try is to end the shower by spraying cold water on your legs. Just as the heat can pull blood to the extremities potentially triggering fainting, etc, that cold blast can send the blood scrambling back to the central organs. Might be the compromise needed to still enjoy a few minutes of hot water!

Rita, While agreeing on how vomiting can put extreme pressure on your sinus region, perhaps prompting those nosebleeds, I'm going to put a different spin on it given an apparent indication that you've had nosebleeds for other reasons. First, nosebleeds indeed have a lot of "common" reasons. But POTS patients seem to be a bit of an uncommon lot to start with, so I'll give you another explanation that might be not totally out of the question. Delta Granule Storage Pool Deficiency of Platelets. It's a bleeding disorder rarer than you may consider POTS to be (thought finding a POTS doctor was difficult? try finding one that knows of this one). Anyway, while rare in the general population, it is statistically found at an abnormally high rate amongst POTS patients. So is there a link? I don't know. Maybe the same genetic marker that makes POTS more likely in us also carries this bleeding disorder. Is it serious? No, won't really impact your day-to-day life. It just means that your blood is harder to clot which just becomes more of an issue in a trauma situation. Your periods lasting longer than your friends might be an indicator. I've heard that only a hospital in Toledo is equipped with the lab test for this disorder and that this test is fairly new (apparently less than a couple of years). My teenage daughter w/POTS/NCS has this bleeding disorder and the test was requested by a POTS/NCS specialist. She's now got a medic tag noting that she's a bleeder and to use a drug called Stimate if needed. For what it's worth, my other teenage younger daughter has been exhibiting POTS symptoms over last few months though not officially diagnosed (tilt tables, etc). Unlike her older sister, she's always had frequent nosebleeds. Coincidence? Who knows?

I wouldn't totally agree that hair loss isn't a POTS symptom. That's true to the extent of the untreated symptoms attributed to POTS. However, it HAS been attributed to some of the medicines commonly used to treat those same POTS symptoms. At 17, my POTS/NCS daughter abruptly lost every hair on her head, her eyebrows, body hair, and eyelashed thinned but didn't lose altogether. And that happened within 72 @%^&* hours. As many unexpected symptoms we were almost used to, we were admittedly not prepared for that one. It was a horrific experience. All sorts of tests were run. Drugs. Toxins. Scalp biopsy. Thyroid. Lupus. It was finally decided that she had an adverse reaction to the beta blocker Nadolol used to slow down heart rate. That, however, remained almost the speculative answer given that she had been changed from Toprol XL to Nadolol almost exactly 3-mos prior. I've heard others attribute such reactions to florinef, but she'd been taken off florinef probably 6-mos prior. The 3-mos significance was that an adverse reaction can "reset" all the hairs to be on the same "clock". Instead of some hairs growing, some dormant, some falling out, etc, at all times -- the reaction gets them all timed together. And 3-mos is apparently the dermatologist significant timetable (and Nadolol is what changed 3-mos before fall-out). It's been a long year. This month will be 12-mos since that experience. She's actually got her hair back to a length where she actually got to have it "styled" over Thanksgiving. Anyway, don't dismiss the thyroid angle, but take a good hard look at your meds and see if anything changed about 3-mos ago. That's my two cents.

Here's an answer with a different spin. My POTS/NCS daughter has tremors from time to time. Her dysautonomic specialist doctor says this is a clear indicator that she needs more fluids! Indeed, when she keeps "with the program" regarding fluids, her shakes tend to go away. When "straying", the tremors tend to return. It's apparently somehow related to blood volume. However, there's always been something in the back of my mind that's more unpleasant to think about. As long as higher fluid intake helps, I'm satisfied it's the blood volume aspect of POTS. But my concern is as follows: My grandmother and my uncle both had Parkinson's. As bad as POTS can be, there are worse things and Parkinson's is one of them. Bad tremors to the point of rendering a simple task impossible is characteristic of Parkinson's. POTS is an autonomic disorder. So is Parkinson's. So, at what point could tremors be an indicator of something more? Definitely a question that I need to ask the doctor sometime.

Explanation I've been given (by a doctor) before is that muscle twitching is common amongst dysautonomic patients, and is a sign that your fluid intake isn't high enough. That you really REALLY need to concentrate on the fluids. However, if you think you're already single-handedly responsible for draining the local water tower, then it might be that you're washing out some of the water-soluble minerals such as magnesium and potassium and thus a supplement would be beneficial.

For my 17-yr old POTS/NCS daughter, caffeine isn't a problem in moderation. However, since high fluids intake is required to help ward off your symptoms, one needs to be careful to avoid that your high fluid intake is including too many drinks with caffeine. That is, you've probably got to be very conscious to avoid caffiene most of the time, but don't feel that you can't indulge altogether.

Florinef probably falls into the category of one person's "poison" is another one's "savior". I think doctors might be quick to prescribe florinef because if the patient is showing signs of orthostatic intolerance, then raising the BP makes sense. Even though some people, including my daughter, had adverse side effects, it's probably worth a try to see if it is beneficial for you. I've never heard of anyone reporting "extreme" side effects .... just that it ultimately didn't work for them and seemingly was causing more trouble than benefit. But hopefully, like Deb, you could be in the "success" category.

My daughter took florinef for a couple of years. It probably helped with the BP and helping to retain fluids to help with blood volume, but simply keeping with the high fluid intake can do that as well. The side effect that we couldn't deal with was the headaches (migraine-type). Our doctor said that, on people prone to migraines in the first place, that florinef tended to constrict the blood vessels right in the forehead area therefore accentuating migraines. She got off it and the headaches subsided in both intensity and frequency. Florinef is also supposed to (along with beta blockers) reduce plasma renin activity which is already reportedly way too low on those who are hypovolemic (too little blood volume). Since many POTS sufferers are hypovolemic, the adverse side-effects seemed to outweigh the beneficial ones. I will say, though, that of all the medicines one could take, that florinef is probably "the most innocent" one. But given the fact that dysautonomic patients tend to be very sensitive to meds anyway, even the "most innocent" meds can cause unwanted side effects. On the same logic, however, find the "right" med and one can see radical improvement as well.

While no experience with either Dr.Low or Dr.Grubb, I can certainly sympathize with the "process" as well as being the parent of a teenager with POTS as, in my case, it's a 17-yr old daughter. Does Dr.Low have your son ONLY on the ssri zoloft? Or is your son taking anything else in combination with it? And what's the worst couple of symptoms that your son is having to deal with (of the long list that I'm sure he's having to work through)? Good luck in August!

Grambertie: I don't think it's necessarily a matter of whether you have POTS instead of NCS. You've got a professional diagnosis, so you might as well call it NCS. But know that the reason the symptoms here sound so similar are, well, because the two are practically "kissin' cousins". Medically, I guess they do get down to splitting hairs differences. I could well be wrong, but I always thought that POTS was more excessively elevated heart rate accompanying a change in posture leading to dizziness, while NCS was more a diving blood pressure accompanying those same posture changes and probably more likely to make you actually pass out rather than just feel lightheaded. And the two have similar treatment plans (like lots and lots of fluids plus salt). Welcome to the site!

"Renin is an enzyme released by the kidney to help control the body's sodium-potassium balance, fluid volume, and blood pressure." There was a 1997 study by Jacob/Robertson and others (with a link to it available down in the bibliography section of the dinet.org web site) that quotes "Hypovolemia occurs commonly in orthostatic intolerance. It is accompanied by an inappropriately low level of plasma renin activity. The degree of abnormality of blood volume correlates closely with the degree of abnormality in plasma renin activity. Taken together, these observations suggest that reduced plasma renin activity may be an important pathophysiologic component of the syndrome of orthostatic intolerance." They were doing the study to test the "hypothesis that reduced plasma renin activity, perhaps from defects in sympathetic innervation of the kidney, could underlie a hypovolemia, giving rise to these clinical symptoms [of POTS]". It is said that renin activity is hard to measure even by research labs, so I'm not sure that your doctor can necessarily easily do it on some kidney test. Anyway, with beta blockers and florinef both decreasing plasma renin activity, added by the fact that my daughter had worse problems "on" those drugs than while "off", she was discontinued off those medications. Hope this helps. Won't begin to say I fully understand all this myself, other than its bottom-line for us is to stay away from beta blockers and florinef. But then again, POTS seems to be something where different things work (or don't work) for different people.

Beala/Laura: The answer is simply high fluids intake. Many POTS patients are hypovolemic or suffer from low blood volume. In those cases, they have low plasma renin activity. Both beta blockers and florinef tend to further lower plasma renin activity and thus aren't good strategies for the hypovolemic. It's one of those cases where one person's "savior" can be another one's "poison". My daughter was taken off both beta blockers and florinef (in favor of other med strategies) because they were actually doing more harm than good. But, in short, by achieving higher blood volume through fluid intake, the heart rate actually goes down.

Somewhere in my readings, I made a mental note that a POTS patient should avoid Garlic. It didn't come from the "avoid" list on DINET, but somewhere else. I'm not a garlic fan or advocate. However, the reason behind the "avoid" is less obvious to me than something like caffeine. Does anyone have a clue why a POTS patient should avoid garlic other than chasing away your potential "catchers" if you were to faint?

My daughter was tried on 3 different beta blockers. None were the same that you are inquiring about, but all 3 were at much lower dosages than the 200/400mg you're noting. It would certainly depend on the medicine as the 3 we tried were all at different mg dosages. I will further note, however, that the beta blocker approach was abandoned altogether several months ago. Our new doctor wasn't a fan of them for the treatment of POTS. We considered excessive fatigue to be an unacceptable side-effect of the beta blockers.

POTShusband: 5mg twice a day sounds like a low "starting" dosage to make sure that your wife doesn't experience any ill-effects. While everyone is different, and certainly you need your doctor's "buy-in" on this, I would think a higher dosage would be needed to make any real difference. My daughter takes 30mg of the extended release in the mornings and has done so for 7-mos after a short 30-day intentional ramp up through the 10mg and 20mg dosages. Further, if she has activities through the evening, she takes 10mg short-acting (4-hrs). If she doesn't have anything going on that evening, she might opt to pass on the afternoon dosage and does not experience any "need" for the medicine. Gone now for these last several months is the excessive fatigue she was experiencing from her POTS. I was a bit apprehensive going in relative to the use of Adderall, but the proof is in the results. The only downside was about the first two days with trouble sleeping, but that went away. She can even take a nap if she wants to without problem. It's just now, if she lays down for a few minutes, it's because she "wants to" and not because she "has to".

I tend to disagree with the idea that there are no "POTS doctors" because they can't be knowledgeable on so many things simultaneously. The problem, from my family's experience, is the the cardio will load you up on cardio medicine, the neuro on neuro medicine, and the GI on GI medicine in a totally uncoordinated manner (all the while knowing the other medicines that one is on) all due to their lack of understanding about POTS in general (probably only was one paragraph in a textbook in med school). There are dysautonomic specialists out there (yes, too few). And a good one can "quiet" some of the symptoms that the GI's and neuro's and cardio's were allegedly being called in to treat. Find a dysautonomic specialist (yes, you'll probably have to travel a couple of times a year) and you likely won't need a separate "group" of doctors.

In the case of my daughter, any time you got just a little bit out of the doctor's "comfort zone", they'd send you elsewhere. And believe me, POTS gets out of their comfort zone quickly. We've had pediatricians send us to cardio's because of the BP issues. Those cardio doctors do the EKG's, echo's, etc. As soon as a GI symptom would flare up, it was send you to a GI specialist for a colonoscopy. First sign of a headache, better have a neuro do a MRI. So much money went down the proverbial drain until the POTS diagnosis and treatment by a specialist who understood that symptoms would appear on all fronts -- cardio, neuro, and GI. However, certainly I'm hopeful that those seeing neuro's here are finding some relief by their treatment.

I may be wrong on this, but here goes one attempt at an answer...... Your intake of fluids is high to help out with the POTS symptoms -- right? Well, such a high fluid intake tends to deplete certain water soluble minerals in the body including -- you guessed it -- potassium. That's why sometimes a potassium supplement is advocated because the fluid intake remains a "must".

1. Mark, father of symptomatic daughter, and probable source of the genetic factors 2. 17 (daughter) 3. Dx: POTS (tilt table tested) + SPUDS (bleeding disorder acronym) 4. Age at dx: 14 (POTS), 17 (SPUDS), symptoms since 11 or even earlier 5. North Carolina 6. Symptoms at worst: Chest pains, lightheadedness, fatigue, migraines, tachycardia/palpitations, chills, hot flashes, heat intolerance, hard to exercise, light/sound sensitivity, GI problems, excessive mood swings 7. Symptoms at best: headaches, chills, can be active, but not in a strenuous athletic way, no major issues in a "relative" sense compared to history 8. Medications/treatments, etc. that didn't work for you: beta-blockers (incl. Toprol XL. Nadolol, others), florinef 9. Medications/treatments, etc., that do work for you: Adderall, SSRI, Depo Provera, fluids, salt, positive attitude In general, last 6-mos on current treatment has been better that last 6-yrs. Beta blockers seemed to help with the chest pains, but led to MAJOR fatigue. And one beta blocker was blamed for an allergic reaction that caused my daughter to lose all her hair completely. Now, however, under a new doctor's care, her energy is back and most "level 10" symptoms have subsided to hardly noticeable with the exception that the migraines -- though reduced to just headaches -- are still annoyingly hanging around. High fluid intake can be a real pain for a teenager, but then, not nearly as bad as losing all your hair (in 72-hrs). Also, she's got a mildly sunken breastbone (pectus excavatum) noted by some as being an indicator of a potential dysautonomic "at risk" profile. Keeping our fingers crossed for the months ahead since her treatment is currently working fairly well (at least when compared to where we've been). Have a 6-yr old son with connectivity tissue issues (extremely rubberband boy flexible), and as such as often been noted in disautonomic patients, we're keeping an eye on him. Our 14-yr daughter really hasn't displayed any problems -- or at least any mood swings from Hades are being attributed to the age and nothing more, though we remain "watchful".

It has been said in my readings, though I can't quickly chase down the source, that it is thought my some medical authorities that "most" CFS diagnosis are really the fatigue symptom of POTS. It's like my daughter getting a MVP diagnosis that her mitral valve is prolapsing. Sure it is. But it's really the low blood volume due to the autonomic disorder (POTS) that's causing the mitral valve symptom. My daughter, until effective treatment, was plagued with fatigue -- and fatigue is very common amongst dysautonomic patients. I tend to consider POTS as the umbrella, and underneath it are found CFS, MVP, IBS, migraines, etc. Any symptom can get worse, slowly go away, and perhaps be replaced by another symptom as the primary "worst" problem.