firewatcher

It is not a medication issue, this has been a gradual thing that just hit bottom before I did last year. The other meds that I have tried (dDAVP, inderal and klonopin) are all recent and have made no difference. The whole female menstrual, libido thing has just dwindled to NOTHING. I wouldn't cry over the shorter, lighter periods, but my husband and I are both unhappy with the other part. I know that excess catecholamines are what causes your periods to stop if you work-out a lot, but I supposedly have too little catecholamines... I also have anti-thyroglobulin anti-bodies, but not the other anti-bodies to distinguish Hashimoto's. After my second child, I did have hypothyroidism, but I don't test low now. This is SOooooo frustrating, I hope Vanderbilt has some answers. I am afraid that I am building them up as a holy grail in my mind.

Hi again, I know that hormone changes can cause POTS issues, but is the reverse true? My Endo has found that I have "minimally adequate" hormone levels: estradiol, LH, FsH, and testosterone. We can't find an LH surge and the highest estradiol level has been 116 pg/mL. My periods are regular (26 days) but extremely light. My periods were never this way before, they were usually really heavy. The labs do not indicate menopause or PCOS. Can POTS CAUSE this?

I LOVE my neti pot. I've used it for 5 years and it has helped me breathe through many colds and stopped many soon-to-be frontal sinus infections! However, my allergist says that my nose is always really swollen and my ENT has shown me (MRI and CT scans) sinus infections that I did not know I had. I am beginning to wonder about vasomotor rhinitis. Have any of you had sinus surgery and had it help with that? Both my ENT and allergist are urging me to get sinus surgery. Any experience? Does it help? THanks, Jennifer

Ernie, Each of us adds a drop into the bucket of information, and you and your family have just turned on the tap! Bless you and your family for suffering through this for the information that will be gained from it! May you have peace and strength! Jennifer

I'm looking too. Many conditions can cause POTS-like symptoms. Right now, I am thinking that I have had POTS for most of my life (exercise intolerance, strange sweating, etc.) But it is the new symptoms that are throwing my doctors and me (tremor, hormonal changes and possible Diabetes Insipidus.) My concern is that I now have TWO problems and that the second has made the first (POTS) much worse. You can have endocrine issues (diabetes,) or cardiac issues (mitral valve prolapse,) or neurological issues (too many to mention,) that cause exactly the same symptoms or you can just have POTS (which is itself a neuro issue and bad enough on its own.) Good luck in your search, I feel like a dog chasing its tail sometimes. Get ready to do a lot of your own research, many docs will just think that you are a hypochondriac, or just don't know squat about it. Unfortunately, we are on the "cutting edge" of medicine here and not much is known for certain.

Endocrinologists are good for all sorts of reasons, but for us "special few dysautonomiacs" they can be especially helpful. They see diabetics (diabetes mellitus) VERY frequently and dysautonomia is a frequent side effect of that. Mine was the one to truly firm up this snowball that is now rolling down the hill by finding the orthostatic intolerance (also frequent in many endocrine disorders.) He was thinking Mitral Valve Prolapse initially and that got me to the cardiologist who found the extreme HR reaction, and on and on it goes. It depends on the source, or cause of your symptoms, and many endocrine disorders can cause all the stuff we go through...so, an endo is good to sort out which is the chicken and which is the egg. Just be very clear (so you don't sound like a nut) about ALL your symptoms, that may not even seem like symptoms (I can't tolerate any cold food, drink or weather, who knew that was a symptom of anything?) If your BP is wonky, bring in a log of it. If your menstrual cycles are irregular, bring in your calendar. The more unemotional, factual information you can give, the more likely they are to pinpoint the problem. Good luck, endocrinology is (according to more than one doctor) one of the hardest medical fields and so endos are hard to find sometimes.

Be careful of that exercise induced asthma diagnosis, I was diagnosed with that 12 years ago and treated agressively (steroid inhalers and albuterol) which never helped. After being enrolled in an insurance sponsored asthma program where they annoy you monthly by phone and give you a peak-flow meter, I noticed something: my peak flow was always excellent >450, even when I was symptomatic. After meeting my yearly medical deductible in February this year, I insisted on going to a pulmonary doc and actually getting tested: guess what, no asthma (lung capacity was 130% of normal and diffusion was 230% of expected.) However during the cardio stress test my heart rate went way up very quickly (180 bpm) and I became symptomatic (hard to breathe, feeling wheezy.) When your heart is beating 3 times a second it becomes hard to breathe! Have him check his pulse and get him a peak flow meter. Albuterol never helped me ( it is an alpha-adrenergic agonist-makes adrenaline more active.) Don't let them tell you "I don't have to test you, you have..." Good luck!

I keep trying to exercise, but WEIRD things keep happening: BP plunges to 87/80, my hands and feet swell and go to sleep, skyrocketing HR (180 at stage 3 of bruce protocol), and on top of all that, I can't walk or talk straight and people think that I am drunk. I have always been active till now (3 medals in martial arts, free-weight body-building.) Even before all these started happening, I could never run, every fitness test my school PE teachers always told me I was just lazy because all the overweight kids were lapping me. Several Dr.s have told me I am deconditioned (my Mom is deconditioned and 50 lbs overweight, but nobody thinks she's drunk if she decides to go for a walk!) How am supposed to do anything when I don't know what will happen once I do it? Does any of this sound familiar? How did you you work with it, I know that if you have "overcome" it, you are no longer on this site. sigh...

I feel your pain, literally. I used to pray that some mad gunman would break into my house and shoot me when I had a migraine. My migraines were so awful and nonresponsive to meds that my OB-GYN decided that it was best to limit the number of periods that I had a year in order to control the headaches. I cycled through BC pills three packs on without the "break" so that I only had 4 migraines and periods a year. They still hurt like h..., but it was only 4, so I could plan my h...-week and go on with life afterward. My latest OB-GYN wants me to do hormone replacement instead of the BC pill, he says that the migraines are caused by the "estrogen drop" and that by maintaining the level of estrogen above that level, I should not have the migraines. It is not an issue for me right now because my endocrinologist has found that I am not producing enough hormones for even the estrogen surge, so no headaches and really light periods. I guess that's a good thing?. Best of luck, I hope you get some relief! Jennifer

I too have unexplained galactorrhea (milk discharge) but I never have had pituitary "issues." I have really low LH and FsH, that is almost like perimenopause in it's symptoms. My neph and first endo say it's partial DI, but my new endo is not so sure.

I have finally joined and would like to introduce myself: I am an extremely nerdy mother of two boys, 9 and 6. I think that I have always had POTS since I could never run and always gotten dizzy if I stood up too quickly. I was MIS-diagnosed with exercise induced asthma 12 years ago when I went in to the Dr. after nearly passing out while attempting to jog with my husband. I had always been told that I was lazy and out of shape, and the Dr. said "I don't even have to test you...you have asthma!" Wrong! I had an stress ECG done several months ago and it was determined that my heart rate went up to 180 bpm with a brisk walk, it's a little hard to breathe when your heart is beating that fast. I have never slept well, so I went to a sleep Dr. who is absolutely positive that I have DSPS (Delayed Sleep Phase Syndrome) a genetic screw-up of my circadian clock. I don't want to go to sleep and cannot actually go to sleep until my body says it is "night" usually after 2am, and getting up at a "decent" hour is torture. We tried a lot of different things in an effort to reset my body clock and all of this culminated in quite the "Crash." I began hallucinating (actually in the dr.'s office), developed a tremor, was unable to carry on a conversation, left the groceries in the car because I forgot that I had gone there, and of course the migraines! My primary Dr. did minimal testing and sent me to a psychiatrist. Fortunately, a good one...he looked over all my symptoms and actually called a neurologist to make me an appointment. Then the ball started rolling, they found autonomic neuropathy, orthostatic intolerance, and central diabetes insipidus (the jury is still out on that one.) My NEW primary Dr. got me in at Vanderbilt (in November) and is insisting that I get completely tested for this DI thing. My current hobbies are neuroendocrinology and orthostatic intolerance research, and occasional gardening when I feel up to it. I am a successful, free-lance artist (at least when I am medicated and don't have the tremor.) I also have a wonderfully supportive husband and family. I can give you all the stats and info on the 4 types of diabetes insipidus, but cannot tell you if I have it, or why it is not really there in POTS. So, hi Y'all, it is very nice to meet you! If you need me, I'm swinging and doing acrobatics at the end of my rope! Jennifer

"trying to catch the deluge in a paper cup..." I can't hear that Crowded House (80's rock group, I know, I'm dating myself) without thinking of all this. THe snippets of info that I can find are that with POTS it is a blunted ADH response, but the constant urination is due to several possibilities: -a reset osmostat (the thing that controls how much water you keep and how thick your blood is.) -idiopathic hypovolemia (your body truly believes that you keep too much water and wants you to be several quarts (3 liters usually) low. -the renin-aldosterone paradox (you don't make enough of either to hold onto enough sodium to stop urinating)[Circulation 2005, Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne, and Robertson...google it] With DI it is purely an ADH thing, either your brain does not make enough or your kidneys don't respond to it. Now plasma and urine osmolalities (the concentration of "stuff" in with either liquid) are obvious with DI, the plasma osm is high and the urine osm is low (pee is very light or clear) and you don't make enough of the hormone ADH to retain water (central DI) or your kidneys won't respond to it (nephrogenic DI.) The crux of the question is this, did any of you whom were MIS-diagnosed with DI do a water deprivation test? Were your plasma and urine osmolalities out of whack? "Something" happened to me in November that is causing me to urinate more than I take in (64 oz. in and 80 oz. out) and my osmolalities are indicative of the central form of DI. If I go off the dDAVP my hematocrit (concentration of red blood cells in plasma) goes way up. I also have a "dump" once it quits working (talk about running to the bathroom!) My first endo and nephrologist (kidney Dr.) looked at all this and said "Aha! Central DI!" But is it? Do any of you have any further information? I have called, faxed and emailed Vanderbilt (I have an appointment with them in November) but I lack the super-secret doctor decoder ring to get a straight answer, actually any answer. Meanwhile I have come off my meds slowly and have been dehydrating just as slowly and will do MORE tests...I feel like a tortured raisin.

Greetings all, I have a question that I can not find the answer to: Why is diabetes insipidus frequently a misdiagnosis? Frequent urination is common for both disorders, but DI is a vasopressin (ADH) deficiency and POTS has other etiology. Does the frequent urination of POTS also have the plasma/urine osmolalities that are seen in DI (high plasma Osm/low urine Osm)? Or is the misdiagnosis based on frequency and quantity alone? Do they overlap? How do you know that it is NOT DI? If any of you know, please tell me or point me to some medical journal articles. Thanks a bunch! I am in the process of my third "dehydration" test and feel like a raisin!